I’ve not been well for a year… is this just how I am now?

[ConnellsNeckChain]

Up until Spring last year I was running half marathons, walking miles everyday, working on a busy ward where I was on my feet all day.

And then I randomly lost consciousness on the way to work one day and wound up in A&E on oxygen and fluids. I was taken to resuscitation (I have no idea why) and kept in overnight. I was discharged in a daze of pure tiredness and get a taxi home. I have no idea what happened other than it wasn’t a brain tumour (CT scan), chest infection/lung tumour (X-ray) or a heart attack (Ultrasound). I just thought it was one of those things. I’m in my 30s and have never ever lost conscious before but I thought maybe it was due to just a mix of factors that day?

Well here I am a year later. Many losses of consciousness later. Dizzy 24/7, vomiting once every week near enough, heavy head and sweating on the slightest exertion. I can’t walk for more than 5 minutes without feeling like the worlds slipping out from under my feet. I have no idea why. I used to love walking. I have periodic pins and needles in my face with the headache.

Drs thought it was anxiety - I didn’t but agreed to take antidepressants. They’ve made zero difference to my physical symptoms. I’ve even intentionally put on weight at the advice of my dr to see if it improved my symptoms. Nope.

I’ve got new glasses, bloods checked, drank shit loads of water, supplemented vitamin d, b12 and iron. Forced myself to walk more even if it makes me vomit or sometimes pass out.

Dr has only just now referred me to specialists, but said I’ll be waiting months and months to be seen.

Am I being too demanding?! This is just no way to live. I know it’s not anything sinister but my life just changed one day and I have no idea why?! Help!!

Have you been checked for benign positional vertigo?

This
also have you seen a neurologist? It sounds like not?

anything to report from blood tests?

PS with bloods I'd really want to know if you were borderline on anything. Also have you seen them with your own eyes - I know someone who was very ill because of a delay on getting thyroid meds, her doctor misread the figure in his brain, it was picked up when she saw a different doctor.

www.potsuk.org/about-pots/symptoms/
has this been ruled out?

Have you had an endoscopy? Sounds odd but hiatus hernia can cause so many weird symptoms especially if it is large and pressing on your heart and vagus nerve.

No you aren't too demanding, you need an answer. Unfortunately the NHS is in such a state, you will be left hanging if you don't keep pushing. Could you afford a consultation with a private neurologist to speed things along? It's about £300. I did this recently when I got stuck in a stupid situation on the nhs where everyone knew what medication I needed but noone was willing to prescribe it, I got it straight away.

Have you considered carbon monoxide poisoning or some other environmental issue with your home?

Oh you poor thing. Do you have headaches? Is the vertigo all the time? Do you tend to lean to the left?
I’ve had awful vertigo and sinus problems for nearly 6 months. Have you seen a neurologist?

Have you had an MRI?

Have you had COVID?
I have a relative where similar symptoms to yours have been connected to COVID by her consultant.

I also saw a neurologist privately and I’m now on amiltriptiline which hasn’t cured me, but has helped.

Who have you been referred to?

The last time I came on a thread and said 'not an expert but have they ruled out X' another poster was very rude. I say it because I'm not a doctor and I wouldn't want you to think that I was. But the balance issues did make me just wonder about Menieres disease and to think it might be useful to see ENT? It doesn't seem quite right by the symptoms but perhaps worth considering?

Was wondering about that, too.

Agree with @PermanentTemporary
you need either an ENT or neurologist.

No help but no you are not being too demanding. I got long Covid (not comparing this to it) and could barely walk to the end of the garden without getting chest pains and feeling like I had to sit down. If I lifted even a small box I felt like someone was stabbing me in the chest. Before that I was a runner and had just started swimming lessons. After months of it I thought as you did ‘ well look, this is me now, I’ve had a good run (;)) of it. When it finally and suddenly started easing up I bawled regularly out of sheer happiness. Everything everything everything crossed that it all works out for you op. Hopefully someone here has the answer. Giant hugs x

Wow thank you so much to everyone who’s replied 🙏 didn’t expect lots of replies!

I’ve been referred to a neurologist, who will decide if I need an MRI. Dr said he won’t refer me to one directly because my symptoms don’t warrant it.

ENT problems were ruled out in A&E! I have no issues with hearing etc, just perpetual dizziness. I’ve had some kind of manoeuvre as well which made me vomit and didn’t help!

bloods are all fine, I’ve had a print out of them. All smack bang average (apart from vit d which was low but now is normal)

POTS was tentatively ruled out via a 24 ECG. I do have slight bradycardia but they’ve said it’s nothing to worry about.

I do think it is somehow connected to COVID. I had a terrible reaction to the vaccines - had my booster in March and this happened in April (not saying it was the vaccine by the way! I think I had covid when I got the last 2 unfortunately)

Im at such a standstill, my drs are convinced I’m “just anxious”, but this is so not like me. I sleep or fall asleep at the drop of a hat. I lost a stone last year unintentionally. My bones ache so much I have to put deep heat on them or blow hot air on them from the hairdryer. It’s truly miserable, I used to be so active!

This is a good call! Although I moved out of my old flat share and into my boyfriends house mid last year after symptoms had started… unless I am allergic to my DP… hmm

You need to see a neurologist and get an MRI head. Could consider going private for MRI if the wait is ridiculous on NHS

My friend had a lot of these symptoms and it turned out to be a variant of epilepsy

Good news that the ENT issues have been ruled out. I'd be more inclined to consider a private neurologist's appointment rather than a scan appointment personally.

YANBU.

You've obviously got some sort of illness. And it isn't right or just, but you will probably have to fight constantly to get any answers - and fight twice as hard as a man with the same symptoms would have to. Notice how quick your doctor was to basically say it's "all in your head".

Could it be Lyme Disease?

Sounds like Long Covid, I have Long Covid and had vertigo caused by BPPV, labyrinthitis and vestibular neuritis caused by Covid along with many other symptoms. I am over 2 years post infection and still not back to how I was before. The GP should refer you to the local Long Covid service.

www.yourcovidrecovery.nhs.uk/what-is-covid-19/long-covid/

www.longcovid.org/resources/patients-and-carers

like a poster above said, could it be an environmental thing? I saw a documentary on someone with heavy metal poisoning from working with some art stuff that exposed her to it. She got really ill with similar symptoms and it was quite a long recovery. Maybe you’re being exposed to some sort of toxins/chemicals which are causing this? Sounds awful and hope you get better soon

I also think it could be long covid, I was ill for just under two years, still not completely back to normal, but much better. Hope you find some answers and feel better soon, op 💜